Tag Archives: diet

Riding Solo

Longtime readers may note that Armand and I used to engage in “cookie nights”, where I would open a box of Soft Batch Chocolate Chip cookies, and he would systematically claim most of the cookies for himself by simply taking … Continue reading

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Rx for ASH

Just in case we get some parents or family members of GM1 children looking for help, I thought I’d post an updated summary of what El Jefe is currently taking daily: Treatment 3 x 100mg Miglustat (Zavesca) 1 x 600mg … Continue reading

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Notes, Quotes, and Billy Goats

There was (maybe still is, I’m not sure) a sports columnist for the local newspaper by the name of Gary Nuhn. Fairly unremarkable, sort of a homeless man’s version of Rick Reilly, he had an occasional column that he called … Continue reading

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Ketosis, Osmosis, Halitosis,…

After last week’s adventures, Armand’s aunt (a NICU nurse) was able to help us “fix” his G-tube by performing her first “button” insertion, with no complications. We’re in the process of adjusting Armand’s feeding tube formula.  He has been on … Continue reading

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Om Nom Nom Nom – Just Without The Whole “Nom Nom” Part

They’re going to start Armand on feedings through the tube today (no soup for him yesterday), at first with a continuous feed working their way up to full volume for that, and then a bolus feed (ironically a word I … Continue reading

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Nothin’ But A G-Tube Thang, Baby.

It’s time. Armand’s had such a decline and such a tough time over the past 6 months that we’re going ahead with plans to put him on a feeding tube. The medicines he is on, and the episodes he’s been … Continue reading

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